Day +111: Goodbye October, hello new life...

Well it's been a while again since I've blogged a decent update but at least I've been tweeting!

October was a mixed month in that the first 4weeks (long month) were great - being home helping out etc. but the back end was a nightmare.

Fundamentally that was the reason for "going dark" both in terms of keeping in touch but also mood and general well being. Basically I spiked a temperature and that meant I had to go back in to hospital on to the ward, I think it may have been triggered from the hip biopsy I had on the 16th October.

Frankly it was depressing after being back at home but the temperature came down quickly thanks to strong antibiotics and I was able to negotiate going home after just one night's observation so at least I was home Sunday evening.

However, the antibiotics combined with suspected mild GvHD meant lots of diarrhoea. This lasted probably a week and a half in total and as you can imagine was incredibly debilitating, humiliating, tiring and depressing to be blunt.

The depression was quite bad and really it was the patience of Sarah, kind words from my Dad plus various messages and calls from people that came in out of the blue and generally thinking about all the folks that have been routing for me that saw me through.

THANK-YOU ALL!

On the plus side, I learned though through talking to the hospital staff that:

1. TBI causes extreme lethargy that can come back and haunt you
2. Fatigue affects coping mechanisms you may have developed
3. Steroids cause mood swings

Being the analytical/engineering type sort, this was actually great news for me to hear as it helped me understand my depression and the dark thoughts I was having during that period.

Hopefully this information is of use to others then to help them when they're feeling blue, even if you are generally healthy - tiredness is a problem:

• Take time out & relax
• Find time for yourself, re-focus and start again
• Talk to people, be open & honest and rely on the support of friends & family you trust
• The world will go on either without you for a day or two or with you working at a reduced pace

Anyway, back to more positive matters. Things have settled somewhat and as mentioned, about 3 weeks ago I had a hip biopsy performed (under sedation as you might imagine!!). Yesterday I received the full results from the test. Essentially there are 3 levels of test:

1. Visual under the microscope, crude but showed things looked quite good
2. FISH test, a genetic test that was looking for the Philadelphia +ve gene that added complications to my leukaemia. The result from that indicated that things look good
3. Molecular test - this is the most in depth test and showed 0% leukaemia cells

Essentially it looks like the intense treatment and the prayers & positivity from you means I am now in remission!!!!

Obviously this still needs to be monitored, biopsies will be conducted every 3 months, I am still on a lot of meds etc. but this is clearly amazing news and hopefully gives comfort to others that all of the above can work if you keep the faith, follow the professionals' advice, take your meds etc. and generally try and get on with things as normally as possible (i.e. being positive).

So I just wanted to let you know, thank-you all and obviously ask you to still keep me in your thoughts(!) so that this may continue and I can start real recuperation now.

I probably won't be be blogging anything significant from here on in, as to be honest I find that doing stuff around the home, helping Sarah with copious admin, staying on top of work/personal e-mails and of course helping with the boys is starting to turn full time again and quite tiring!!

I will be tweeting the usual mundane stuff about hospital visits etc. :-) but will include general updates on status etc. as part of that. Plus geek boy that I am will likely start turning some attention to interesting (well to me anyway) technology & gadgets...

Any please stay tuned if you can, thank-you again, love and peace to you, your families and all.

Chris.

Get ready the French...

Quick update on Bastille Day seems appropriate given that one half of the stem cell infusion I'll get on Friday is from the remaining French bag.

Today is Day -3, I've had 2 TBI sessions (Total Body Irradiation) - seems OK so far other than being quite tired directly afterwards. I've also started Ciclosporin and MMF (Mycophenolate Mofetil) both immunosuppressants to help the cell infusion take when I have it on Friday (basically I need for the cord stem cells to come in and see me as the enemy and start killing off my white blood cell capability and for them to take over so that the leuakeamia is cured.

TBI and the two drugs haven't caused too much in the way of side-effects at the moment but that is very likely to change next week, hence I'm burning up my BT Openzone credits here at the hospital while I'm still in the mood to be online and blog and stuff.

Oh - and the move to the Churchill went very smoothly, the new room is very nice but as might be expected there are teething problems, most noticeably for me is the mornings as my TBI is meant to be at 08:30 but so far I have been an hour late for both.

Pictures: old empty blue room of Ward 5e versus new empty neutral room of Churchill, there was no bed or furniture when I arrived but that's taken care of now :-)

Introducing my new girlfriend Dolly...

Second day (day -7 with day 0 being cell infusion day) in hospital and last one in Ward 5E at the John Radcliffe, tomorrow the move to the Churchill hospital is a go; not sure what time exactly I'll move over, the plan is to get at least one chemo into me before going and then have the last one upon arrival as a welcome gift...

So far chemo has gone well, I think helped by being pretty "healthy" ahead of going in - ideal weight, reasonable stamina enough strength to lift up Luke...

Tomorrow will be the last day of chemo, Sunday a "rest day" and then Monday will be the start of radiotherapy, now with the advantage of just popping downstairs for treatment as opposed to being shipped back and forth from the JR to the Churchill and back by ambulance.

I have a new girlfriend, Dolly (the drip-stand). Here are some pictures of her dressed for the shower and "au naturel". The heparin I tweeted about is a blood thinner to help protect my liver from the radiotherapy (total body irradiation - TBI) as TBI thickens the blood. It's a slow push syringe that squirts in 1ml over the course of an hour, it's the wide pump below the blue pump. I will be hooked up (continually) to this until day +30 so I have had to get used to taking Dolly into the shower with me and everywhere else...

I also have loads of fluids pumped into me currently to protect my bladder from the effects of the increased cyclophosphamide dose I am receiving as part of chemo (the other chemo is fludarabine), this will likely stop as of next week.

Putting on loads of weight because of all the fluids, I'm getting furosemide to make me go to the loo a lot to try and lose it and on that note, the call of nature beckons.

Dolly, time for walkies...

Puff Daddy

Voluntarily headed off to the Churchill Hospital yesterday, as my Hickman Line hasn't been used for over a week I needed to ensure that it was still OK (or patent as the medics say) and not blocked through things like blood drying up in it etc. from lack of use.

Fortunately everything was fine as in the worse case scenario of the nurses not being able to get it working I would have to have had a new line :-(

Whilst there though I was able to find out the results of my bone marrow test from the other week - it confirmed that I was still in remission and my Philadelphia Chromosome ratio had dropped from 4.5% to 0.06% which is excellent news (when first diagnosed it was around 82%...)

This is thanks to the Imatinib (Glivec) tablets I take daily, however there is one uncomfortable side effect that is exacerbated by the heatwave we are having, fluid retention that is causing my feet to look like bags of jelly at the end of my legs. My feet are too swollen for shoes and it's proving difficult to get into my sandals!

I've been prescribed Furosemide which seems to be working by making me pee like a cart horse to be blunt, which is fine when at home but caused some severe difficulties when we were stuck in the M40 traffic jam I tweeted yesterday. Needless to say, plenty of country hedgerows were saved from drought on the drive back home along the back roads...

"You've got gallons of stem cells..."

Today (Monday) was first of the harvest days, I've had 4 days of the GCSF injections and my lower back and breast-bone/ribs were really painful, to the extent I couldn't pick things off of the floor and have had difficulty sleeping.

In a way then I was looking forward to the harvest but also apprehensive about it too because of the general procedure (see previous post). Anyways, we arrived around 08:20 right on time for our 08:30 appointment.

Things kicked off with a general tour and overview and then bloods taken to see if a harvest would be worthwhile (i.e. had I generated enough stem cells for collection), this is a quick test that says definite yes, definite no or maybe; I was a maybe and this prompted another longer test that took about an hour to complete.

So at about 10:10 the result was announced, they were looking for a number in the area of 8 or better. I was 60!!! Goodness knows then why the first test was so lukewarm then but it meant that it wasn't a wasted trip and the machine was prepped.

This took a fair while to hook up and once all was ready I had a local anaesthetic to my arm so that they could insert the needle that would draw the blood out of my body, the return blood was hooked up to my Hickman line as expected. However, the machine started complaining about the return line pressure and I ended up with a needle in the other arm for the return flow.

I was told that this isn't that uncommon as Hickman lines are designed for chemo and not the pressure of the "blood extraction machine" (there was a technical term they used but I've forgotten), it just made things awkward as my mobility was vastly reduced.

The procedure is 200 minutes and fortunately I was able to sleep for the first 103. When I woke up I discovered that the machine variables had been tweaked to eek out more cells from me given my high count (this had been discussed prior to me being hooked up so I was OK with that).

Spending the rest of the time was the nurses taking more blood (they were worried that I had spiked another temperature) and feeding me calcium tablets and milkshakes, a side effect of the procedure is that one of the anti-coagulants causes a transient calcium loss that causes a tingling in the lips, fingers, toes hence the calcium replacement measures.

Unhooking was uneventful - just a bit sore - and we set off home. Just before we got to Maidenhead I received a call from the hospital indicating that I "had gallons of stem cells", this is great news as it means that I don't need to go back tomorrow (Tuesday) and I don't need to have anymore injections - woo hoo!

A trip to Oxford is still on the cards for Tuesday though as it's the radiation test dose, at least though that's in the afternoon so tomorrow will hopefully be a less exhausting day.

Footnote:
Vincent was asking more about the procedure, stem cells and my treatment - I'll explain as best I can...

• The treatment today was to collect peripheral stem cells for my own use, the GCSF injections stimulate the bone marrow to over produce the white cells (hence the bone ache) and the blood collection machine extracts blood from me, spins out the cells and returns the rest.
• The stem cells are to be used only if the umbilical cord transplant fails, so the stimulation of white cells (although I believe in some instances this is used for some transplant patients)
• The cells taken from me today, should they be used, will return me to my current remission state with a likelihood of relapse so the umbilical cord is key as that is my chance for longer term survival

Hope this answers the question!

Harvest Festival

Not that I'll need it because the transplant will be fine of course but in case things go wrong, the doctors will "re-boot" me by injecting my own white blood stem cells back into me, this will of course mean I'm back in the remission state but let's not go there.

In order to get these stem cells, I need to take a course of injections of something called Granulocyte-colony stimulating factor or GCSF. These started today (Thursday) and carry on tomorrow, over the weekend and the last one will be after the first day of harvest (Monday) and the point of the GCSF is to stimulate the excess production of white blood cells so that they can be harvested and given back to me should that be necessary.

Of course there are side-effects but they aren't too bad just ironic that they will mirror to an extent what alerted to the whole problem back in February, namely bone ache as there will be excessive (good) white cells crowding out.

At the hospital before being discharged, I was asked if I wanted to do the injections myself. After picking myself off of the floor after laughing so much (I am better with needles now but still hate it and can't see myself doing it to myself) the option of the local GP and/or district nurse came up and that's indeed what happened today and will be the case over the weekend.

Monday I'll be back at the John Radcliffe over at the National Blood Service for the harvesting to take place. The procedure is identical to the bone marrow donation (not test) process - a needle is put in one arm, the blood extracted and put through a centrifuge that spins out the white cells and the rest of the blood is returned through a needle in the other arm; the exception in my case is that as I have a Hickman line the returned blood will go via that instead. Unfortunately the line can't be used for extraction as it is too soft for that process.

It takes about 3-4 hours to do the extraction and quite a bit of time to set up too, Monday will be a long day then and I'll be back on Tuesday to finish the process. Tuesday I have to finish at 14:30 as I then need to get over to the Churchill for my radiation test dose at 15:00.

I think Wednesday I will be largely in bed!

Dr. Bruce Banner...

Dr. Bruce Banner was the Incredible Hulk in case you didn't know; not that I'm being glib about it but every time I think about radiotherapy I can't help but think of the the opening sequence of The Incredible Hulk TV series from the late 70s. The consultant told me I was showing my age but it made light of the situation at any rate.

Next Tuesday (16th) I will have a radiation test dose, this will allow the medical team to extrapolate and determine what dosage they need to apply during the transplant procedure - the key thing of concern are the lungs and not "over-cooking" them, things like the brain and heart are apparently very resilient to radiation and the risk there isn't so bad.

The test dose will also get me used to the procedure - the radiation is only applied for 20 minutes or so but the set-up takes a long time as I need to be positioned "just right" within a perspex box before the dose is administered, the reason for the box is that it helps disperse the radiation more evenly apparently over the body.

Because of my age and they think I can take it, my proper treatment will be in 5 doses (as opposed to 7 or 8), the point of the radiotherapy isn't so much to kill remaining cancer cells (although that may happen but the chemo is meant to take care of that) but more to "sterilise" the bone marrow to reduce transplant rejection (Graft versus Host Disease).

Although the procedure is painless, side-effects will be tiredness, sensitive skin (not as bad as sunburn but more like 'sunblush'), nausea/vomiting, diarrhoea, sore mouth (ulcers and dried up salivary glands) and hair loss (I've been guaranteed that I will lose my hair with this...)

Turning green and getting really tall and muscular when I'm angry isn't on the list of side effects.

Infection

You may recall from earlier postings that infection is one of the critical things to guard against during treatment due to low-to-zero immune system. Remarkably I seemed to have protected myself against it since March but in May it all came crashing down…
• 4th-11th May
• 20th-26th May
• And now, 31st May – still here, trying to get my temperature stabilised…

All in all quite frustrating and in some instances alarming when my temperature kept climbing and I couldn’t stop shivering and shaking, but one thing that came out of it – for ages I’ve been (through my old doctor) under the misapprehension that I was allergic to Penicillin. I never used to be and it turns out that I never was! That at least makes things more manageable!

That was the week that was

So before it's too far a distant memory, an update on last week...

Treatment was meant to be pretty light with just Monday, Wednesday & Friday Caspofungin drips (Asparaginase jabs Monday too) planned and in theory should have been just "in & out".

Monday though proved to be quite a long day - had the jabs and the drip but a side effect of the Asparaginase is it reduces the clotting factor in the blood hence I had to have an infusion of FFP which took time as it requires ordering, thawing and of course administration. Coupled with a later than planned start anyway - it wasn't until about 18:00 that I was settled back at home and pretty tired. The upside was I was able to spend quite a bit of time with my Dad before he flew out to Mauritius.

Wednesday was quick but unfortunately accelerated owing to the news whilst we were in the hospital that Luke gashed his head at nursery and that they were taking him to hospital. Fortunately I had nearly finished with the Caspofungin, so whilst Sarah and I were both shaken up by the news we were at least able to call around for help and actually head back almost immediately. Fortunately things had sorted out by the time we got back without him having to go to Wycombe hospital (the original plan) however St. Marks did insist he got checked out at Wexham Park.
Sarah dropped me off at home as things didn't seem as drastic with Luke, plus it would be a long wait and more significantly we both thought it would be better to avoid another hospital (infection risk). Luke came home later - OK all things considered and fortunately they were able to use a bunch of steristrips rather than stitches. The strips will come off this Wednesday, we've been keeping his head dry in the interim...

Friday was a quick day thank goodness but the steroid tapering was really having an impact on me by then and to be honest it's only today that I've felt like "working" - the good news on Friday was that I was given this current week as a "week off". Except Wednesday (tomorrow) where it is planned to take a bone marrow sample to see where I am.

So that's last week - not much to blog for this week as it's supposed to be a quiet one but likely to be significant if the bone marrow analysis is finished ahead of the Easter weekend...

Apologies for the lack of updates

Just wanted to blog a quick update about the lack of updates - steroid withdrawal (I'm assuming it is this that's causing it) is really knocking me out. I'm not sleeping well at night and find it difficult to sleep during the day, consequently I'm pretty tired and feel spaced out a lot.

As well I'm feeling quite sick - either bloated sick, hungry sick, tired sick or some combination...

Have been feeling a bit low (physically) then and not really up to social networking duties! Plus to be honest when I have had sessions of feeling bright & with it, I've elected to spend time with family and/or sit outside to enjoy the time I have to myself.

Will definitely start catching up soon though - hope you understand!

Steroid withdrawal

I think I may have mentioned in a previous blog that last Friday was my last full dose of steroid treatment (105mg per day for the Ops types...).

Rather than go cold turkey on it, I am now on a week of "tapering" - 60/40/30/20/10/5mg doses that will end this Sunday (the 5mg dose).

It's playing merry havoc with my system at the moment, principally in the sleep department it would seem, the effects whilst on steroids were:

• Increased appetite
• Keeps you awake
• Muscle loss(!) from biceps and quads

Now that I'm coming off of them I would expect things to change but still seem to have the appetite - talking with another Consultant yesterday, he mentioned that the fatigue I particularly felt yesterday could well have been due to the change in steroid regime.

Tomorrow I'm down to the 30mg level for a couple of days so we'll see how things go.

Sausage & Egg McMuffin

OK - this is getting an obsession but hopefully it will ease pretty soon...

Part of my treatment is to take a pretty substantial amount of steroids everyday, many side-effects (my thighs and biceps have really shrunk) but biggest thing is HUNGER!!!

You may have noticed a couple of references to McDonalds in previous posts, I wouldn't say I'm obsessed but I do like it once in a while but one of the biggest things that has driven me to distraction is that on hospital days we get up early, I have enough breakfast to take some of my meds - the stronger stuff I wait until I get to the hospital as there is usually a wait from us arriving to the Day Treatment Unit opening - but every time to the hospital we drive past a McDonalds on the London Road:


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just as I get ready for "second breakfast" (yes, I know this officially makes me some kind of Hobbit) and because of how my taste buds are (again from the tablets), a massive urge for a Sausage & Egg McMuffin takes over.

Unfortunately, it's not allowed as I'm supposed to be off fast-food and takeaways because of the neutropenia - there is an excellent document that people should be aware of as to how to protect themselves, whilst at the hospital I was surprised seeing people eating salads which although are obviously healthy for a normal person, contain bacterial risk for those with no/low immune system.

Anyways - at the hospital there is a canteen where I can get something that helps stave off until lunch time and allows me to take the rest of the medication.

Tomorrow (Friday) is my last day of full blow steroids, after that I will be tapered off of them to allow my body to adjust to the withdrawal - it will be interesting to see how that affects things.

Treatment Progress - end of Phase 1

Ugggh, awful set of days since Friday and to be honest I've only really just got myself round to being able to write about it.

Friday (20th) was the 4th and last of my Phase 1 induction IV chemo, more chemo is to come but that's for a little later. It also happened to be the last day of the outpatient ward being open at the John Radcliffe ahead of moving to the brand new building/ward at the Churchill (still in Oxford, only about 2 miles away but it is a little easier for us to get to as we now miss the major roadworks).

Because of the move, the ward was shut except for one bed as it was a marshaling area for crates & equipment and myself and the other 2 people booked in for the day had our chemo in a little office - very cosy :-)

It was over pretty quickly and we were home early but right from being home, I started to feel really low very quickly - mainly in the form of extreme fatigue and nausea. To cut a long story short, although the anti-nausea medication helped stave it off physically, it was a rubbish weekend of feeling very low and depressed.

On the "plus" side - I had an opportunity to talk about this with one of the wonderful nurses yesterday about the weekend and I feel somewhat "normal" in that what I described matches a lot of other people's experiences.

Today, physically I feel OK but just really, really tired - I probably ought to sleep more during the day but I don't want to be waking people up in the night by altering my sleep pattern too much; plus when I wake up I'm usually hungry so that's a pain finding something easy and quick to stave off until breakfast!

This week is a relatively easy week I think for treatment - "just" Asparaginase jabs & Caspofungin IV (Mon/Wed/Fri) but tomorrow (Wed) I will also have an Intra-Thecal (spine) jab - I will be taking the sedative option to try and knock me out!

I'm still in the Induction Phase but between Phase 1 & Phase 2 - start of Phase 2 will be determined from my blood counts reaching a certain level again before more blasts of IV chemo, hopefully I will be getting some strength up at the same time as hospital visits will increase to 4 times a week for 3 weeks :-(

Main risks at the moment - the neutropenia, so keeping myself to myself as much as possible to avoid infection risks...

On the peripheral neuropathy front - tips of toes are starting to be affected I think but it's not something I'm usually focused on so difficult to tell. Fingers though are a nightmare, dull numbness about half-way up each finger and thumb - doesn't stop me from doing things but it's just a generally unpleasant sensation and makes delicate tasks a little fiddly.

Finally for this post - hair. I think after a long battle to hold on to it, it's starting to go. Not sure if it's all coming out or just thinning. Jake is excited about the prospect of me going bald, I'm not sure I share his enthusiasm but will post a picture if I do as I'm kinda curious myself now!

Neuropathy & Neutropenia

There are some classic and/or well known side-effects of chemotherapy such as nausea (for which there are several excellent medications to help control this e.g. I'm taking Cyclizine & Ondansetron) and hair-loss (alopecia). So far my hair hasn't started coming out yet although I've had it shaved pretty close to make it less of a thing if/when it does (both for me and Sarah & the boys).

Two things I'm experiencing that are possibly not so well known are Neuropathy and Neutropenia.

• Neuropathy - specifically Peripheral Neuropathy. Basically as a result of the chemo, there is a constant numbness/dull "pins and needles" in my thumb and fingertips.
  It's really more of an annoyance than anything else but I do need to watch that it doesn't extend further into the hand. From a practical perspective, obviously I'm still able to type but using my phone is getting a little harder because the buttons are obviously smaller, especially on the slide out keyboard.

• Neutropenia. This one is harder as basically it means my immune defences are really low. I have to be careful what I eat (I'll blog something about that some point soon as it is very important and could be useful to others) and avoid crowded places (like hospitals I guess!) as catching and dying from infection is a genuine risk.
  This of course limits the number of people I can see currently, going out, having a curry or McDonalds(!)
  My last blood count puts me severely neutropenic but the medication I'm on is looking to stave of viral, bacterial and fungal infection and coupled with taking regular temperature checks to make sure all seems normal.

Tech Alert - OK the "gadget-boy" in me cannot control itself anymore. I really like my phone, it's an HTC S710, Windows Mobile device. I've been a huge fan of Windows Mobile right from the days when it was known as Windows CE (unfortunately shortened to WinCE).

Back in what must have been around very late 90's, I was very lucky to win a HP Jornada 540 in a competition and very quickly got introduced to a device that carried my photos, music, Outlook, e-books and notepad in a very compact and actually quite reliable form. It's interesting to see how other companies are only now at last catching up with what Microsoft was able to commercialise way back then. It would be remiss of me though not to mention the Apple Newton at this point which more than likely got the Redmond brigade on the right road.

The phone was from BT - I didn't like their customisation of Windows Mobile so burned in an upgrade that has proved ultra reliable and stable but more importantly allows me to keep in touch through SMS & mobile internet when at the hospital.